Personal Science: Does Self-Experimentation have a place in today's research?

by: Ng Elizabeth
Date: November 2007

Self-experimentation has been an important means of making new discoveries, and it is only in the past century that self-experimentation has been increasingly frowned upon. In fact, prior to the eighteenth century, human research using only one or small numbers of subjects was the mainstay of scientists. However, as our scientific knowledge developed, so too did higher ethical standards, and public demand for studies with statistical significance increased. Naturally, study sizes increased and methodology changed to accommodate popular demand. Despite this, a handful of scientists still rely on self-experimentation to make vital discoveries. Contemporary self-experimentation provides an important means for individual scientists to have an impact where they would otherwise be denied the opportunity. Discoveries made by self-experimenters have revolutionized cardiology, shattered common beliefs about ulcers, and much more.

The Heart Explorer

In the early 1900's, though surgeons had explored many of the body's organs, including the brain, it still remained a taboo to touch the human heart. Believed to be the "spiritual center" of the body, the heart was shrouded in a cloak of fear that prevented surgeons from learning about its function, or even saving lives. In fact, much that was known about the heart was based on William Harvey's 1628 discovery of the circulatory system. It was not until 1929 when a headstrong young doctor named Werner Forssmann decided to break the taboo and touch the human heart.

Forssmann, an intern at a small Red Cross hospital in Germany, had been fascinated by a sketch of French physiologists inserting a thin tube into the jugular vein of a horse to reach the heart. Miraculously, the physiologists could probe the horse's heart without causing death or injury. Forssmann became determined to attempt this method on a human. However, when Forssmann approached his instructor, Dr. Richard Schneider, with the idea, Dr. Schneider refused to allow the procedure on any human. Not to be deterred, Forssmann continued with his plan in secret, recruiting the help of a head nurse named Gerda Ditzen. Forssmann inserted a ureteric catheter though a vein in his elbow, and threaded it all the way to his heart and into his right atrium. At this point, he realized he needed some sort of proof, and so walked to the radiology department to demand an x-ray. In 1956 he won the Nobel Prize in physiology or medicine.

Today, is cardiac catheterization is an important tool in a number of life saving procedures, from angioplasty to biopsy. It is also no longer taboo to operate on the human heart; in 2004, the American Heart Association estimated that 646,000 open-heart procedures were conducted.

The Ulcer Cure

A second Nobel Prize was awarded to two Australian self-experimenters, Dr. Barry Marshall and Dr. Robin Warren, in 2005. Marshall and Warren, like Forssmann, also faced an entrenched dogma of the scientific community. Although Marshall and Warren had found evidence of bacteria in the stomach, H. pylori, which they believed to cause ulcers, the rest of the scientific community believed that the stomach was a sterile environment, where extremely low pHs would kill all life.

Marshall described his frustration to an AP reporter, saying, "After about three years we were pretty convinced that these bacteria were important in ulcers and it was a frustrating time for the next 10 years though because nobody believed us. The idea of stress and things like that was just so entrenched nobody could really believe that it was bacteria. It had to come from some weird place like Perth, Western Australia, because I think nobody else would have even considered it." Like Forssmann, it was not until the team took a bold step that the scientific community took notice, and in 1984, Marshall swallowed a beaker full of H. pylori , the bacteria he thought to cause ulcers. Marshall suffered from stomach inflammation for about two weeks, but today, ulcer suffers can find relief by treatment with antibiotics.

The Diploid Genome

More recently, new research by Dr. J. Craig Venter may help open the door to scientists who blur the line between researcher and subject. In September 2007, Venter announced that he had successfully sequenced the entire diploid genome, using only his own DNA. This "complete" genome has already shown that genetic variation within a genome is much greater than previously thought. However, theses types of discoveries, while useful, are not a true measure of the benefit from Venter's action.

Like Marshall, Warren, Forssmann, and many other scientists, Venter faced a stigma within the scientific community. The National Institution of Health (NIH) and many other public research organizations are unwilling to do research with human DNA for fear of violating the privacy of individuals. Venter, however, believed that "it was an acceptable risk" to publish his own genome in order to help change the perceptions of the scientific community, and to hopefully "help public understanding.and have an impact on the broadest number of people." By breaking the taboo surrounding the human genome, Venter hopes others researchers will be guided by curiosity rather than turned away by fear.

The Ethics

Despite the success and the altruistic aspirations of these scientists, many fear that self-experimentation may have ulterior motives and darker consequences. The most notable case of misuse of self-experimentation occurred during World War II, when Nazi doctors used brief self-experimentation as justification for widespread experimentation on un-consenting prisoners. Although the Nuremburg Code includes passages to prevent this kind of misconduct, some scientists are still concerned with the moral ramifications of self-experimentation. In a 2004 meeting of the Harvard School of Public Health, many panelists expressed fears that overzealous self-experimenters might pressure their colleagues into dangerous situations, since many self-experimenters cite the golden rule when describing their motivations.

"It is hard to ask someone else to do it if I wasn't willing to do it myself," said Dr. Venter of using his own DNA. "It was about leadership for others."

However, panelist Susan Reverby argued that "there is al least a danger here of what might be called the pyrite rule- that is, the fool's gold rule. Doing unto others what you might do unto yourself is hubris, and dangerous, because it posits a form of equality that doesn't always exist."

Also to be taken into consideration is the question of objectivity. When a researcher is so passionate about his research or so closely involved with her experiment, is it possible to step outside the experiment and make valid decisions? These are important concerns when considering self-experimentation, but are they enough to deter scientists?

Perhaps what is more important to note is that in the recent past self-experimentation has been used as last resort to overcome a majority opinion. While self-experimentation may not have a place in much of the research today- such as cancer and AIDS research- it is important to remember the self-experimentation can be an important part of the progress of science.